Changes

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2016 started on a positive note, marking what will be the year that Poppy’s treatment finishes. It felt good to have something so momentous to look forward to, finally a light at the end of what has been a very long road.

As with all new years, I often start by thinking backwards to what has passed too. And, an email from Word press on New years Day gave me the disturbing news that I’d only written two blog posts last year. Pretty bad form by me, and I wrong I intend to right this year.

I remember reading somewhere that ALL blogs tend to get pretty dull when patients start maintenance, as nothing much happens worth writing about. I dispute that theory though. Certainly things may not have been as dramatic as the early days of diagnosis and the first stages of treatment. But, I don’t think that being on treatment for Leukaemia could ever be described as dull. More that we have settled into a routine which still involves frequent hospital visits and medicine. It’s become a way of life for us as a family, Poppy’s bedtime routine is medicine (chemo), brush teeth and bed. It’s only when I relay our schedule to others that they seem surprised at what it involves. We’re still in hospital regularly, checking temperatures frequently, and watching Poppy have chemo in her line and a course of steroids every four weeks…

Poppy’s world may keep turning but there is not a day that goes by when cancer and treatment are not a part of it. We see Poppy doing so well and looking so healthy, but terrible news from hospital can filter through of children the same age not being so lucky, and you can be brought back down to earth with a bump.

I suppose what I’m trying to explain that it makes life feel extra fragile. And, I assume it always will. Our future may be finally looking positive, but it will never feel the same again. I think all our lives have changed beyond measure. I know I’m certainly not the same person I was two years ago.

Generally speaking Poppy has been pretty well and healthy. The latter part of 2015 saw some pretty big changes for us all. In September of last year, Poppy started school. A huge achievement in so many ways. And, something I could never imagine her being well enough to do.

Poppy’s school have been exceptional with the care and support they have shown towards her. Helpfully the nursery she attended was part of the school so everything was already very familiar to her. Before she began I liaised with the staff, and a MacMillan nurse came along and we were able to ensure everyone was up to speed. It was a difficult meeting for me, as I felt there was a difficult balance to strike between meeting Poppy’s additional needs but not wanting to single her out as different in anyway. In many ways it felt as though starting Reception was a fresh start for Poppy, so different to when she started nursery and looked visibly ill with no hair, and underweight. As the classes had changed, not all the children and their families knew Poppy – she didn’t just have to be the little girl who had cancer any more.

She could just be Poppy. The one with the red hair. And she was. I found I would instinctively want to talk about Poppy’s treatment to the new parents I was meeting – but stopping myself, as amazingly it wasn’t what they knew her for.

Adjustments all round. The new school year of course meant thirty children spreading germs and it wasn’t long until we found ourselves back in hospital. Poppy seemed to catch every virus going and at one point she had an ear infection, a chest infection and the flu. This also coincided with Oscar starting nursery (and him making his feelings very clear that he was not pleased about it every time I dropped him off) and us moving house. They say that moving house is one of the most stressful things you can do, but although it was we couldn’t have been happier to leave our old house – with too many bad memories and everything good tainted by it being the place where the worst time of our lives occurred.

So the year sped on and before we knew it we were in our happy house with Poppy settled at school and doing well. Oscar was even crying less and less when we took him to nursery… It’s easy to become superstitious when you have faced what we have with Poppy and I am a worrier by nature, but perhaps finally we were beginning to see some light creep through the dark. We’ve had the date through for her end of treatment and the point that I could never let myself imagine in those early days, finally seems within our grasp.

Who’s That Girl ?

 

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I can remember reading a while back that people who write blogs about cancer tend to go a bit quiet when the patient is on Maintenance. Meaning that after the intense beginning and working through your thoughts, things are some what calmer in the later stages of treatment.

This has definitely been true of this blog. Apologies for the radio silence. It has certainly been a while.

I wish there were some great reason, that we’ve all been incredibly busy doing exiting things, but the truth is that we’ve been getting on with life. And, to be honest I shouldn’t really apologise for that.

I was initially going to write that nothing much had been happening but something struck me this morning when we dropped Poppy off at nursery, something extraordinary has actually happened…

Our Poppy’s back.

To try to explain what I mean, is to say that we’ve got a happy and healthy child who despite still being on treatment for Leukaemia is playing with her friends, and running around happily. In short she’s doing exactly what any four year old should be doing. Without having to feel rubbish or miss out as she’s in hospital. I genuinely never expected this yet. I don’t honestly know if I expected it at all.

It’s hard to pinpoint exactly what happened or when. But, over the last month or so the change in our Popster has been incredible. The shy and quiet little girl who wouldn’t look at anyone when they spoke to her, let alone think about speaking to them, has morphed into a cheeky, happy chatterbox. The confidence she has around people is something I never thought we would witness in Poppy.

She is hardly ever quiet these days. She seems to skip everywhere. She’s getting a bit mischievous and is fiercely independent. In short she’s doing what children her age are supposed to be doing.

She had a bit of a tantrum yesterday and I found myself wondering what on earth could have caused it. It wasn’t steroid week and she wasn’t tired from chemo. I even questioned if her bloods were getting a bit low till it dawned on me. There doesn’t have to be a cancer related reason. She’s just being four.

That was a bit of a revelation. I suppose we’ve got to adjust our mindsets too. She’s not always going to be this fragile little thing who needs special treatment, or kid gloves. Far from it, as yesterday’s paddy would attest.

Others have noticed and commented on the change too. Her nursery teacher came and told me how she has come out of her shell in class, how she’s interacting and playing happily with the other children. It was news in the early days of nursery we never thought we’d hear.

Family members have also witnessed the change in Poppy. She trotted off to her Auntie Karen’s the other week without so much as a glance back in my direction. My brother and sister in law were in the UK this month, and couldn’t believe the change in her. Poppy actually sent me back in the house so she could spend some quality time with ‘auntie’ Matthew by herself. When previously they’d have counted themselves lucky if she gave them as much as a frown.

Even other parents at nursery have noticed the transformation in her. As my friend put it, it’s like we’ve got a different child.

I don’t know if I ever thought we would get our pops back. I’d imagined an almost watered down version of the little girl we had before cancer came along. Presumably it has changed her? But, perhaps the only advantage of her being ill when she was so young, was that she’s still young enough to grow. To develop into the person she’s always meant to be, despite being ill. Rather than because of it? Or, perhaps you just can’t fight fate / genes/ whatever and nothing was going to hold her back and stop her being who she was always going to be?

When your child starts treatment for cancer, you are essentially handing them into the care of others. Which is difficult enough as it is, but you wonder who you’re going to be handed back at the end of it. It skews your version of events, this isn’t how a childhood is supposed to be. I think I’ll always feel bitter about what I feel she’s missed out on. But as we’ve mused in the past, Poppy doesn’t really know any different. Perhaps in her mind all children go to hospital and play with toys there? Like another rite of passage.

The version I knew of Poppy before she got ill seems so far away now. She was still practically a baby. She was tiny, still in nappies and I was still using a pushchair when I took her out. These days she is obsessed with using the toilet, never shuts up and wants to go everywhere on her bike. Her most used phrase is “I must do this all by myself”. And it’s great. But getting to this point in her time line is blighted by what she’s gone through in the meantime. And yet, when I look at her she doesn’t look ill. I don’t ever forget what she’s got going on, but it’s not the first thing I think about everyday. And I certainly never ever thought that would happen.

I hope she’s not defined by what she is going through. She’s so much more than a cancer patient. First and foremost she’s Poppy. She’s a daughter, a granddaughter, big sister to Oscar and little sister to Zain and Bully. She’s a niece, god daughter and a friend. She’s the girl with the cheeky grin incredible hair again.

I don’t want to sound blasé or as though I’m taking it as a given that everything will be alright. But, when I see Poppy doing as well as she is doing then it’s impossible not to feel positive and start to believe that the end may finally be in sight.

Anniversary

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This photo was taken a year ago today. It’s exactly a year since Poppy was diagnosed with Leukaemia and all our lives took a direction we never thought possible.

It’s hard not to used clichés sometimes and I’m loath to use language such as ‘journey’ or ’emotional roller coaster’ – but it’s a pretty accurate if somewhat trite way to describe the path our lives has taken this past year.

A year ago I’d had absolutely no concept of Poppy reaching where she is today. I was getting through that evening on sheer adrenaline and hour at a time at first, trying to keep it together for the fear that if I stopped for a minute, I’d have to face my biggest fears and darkest thoughts…

The day she was diagnosed was a Thursday, and the days leading up to it had been strange to say the least. It all started on Sunday 19th when we took her into an NHS Walk In Centre, concerned she was ‘looking a bit pale’ and it snowballed from there.

The nurse at the Walk In Centre suggested we go to A&E at hospital, for the purpose of ruling out a few basic things. We drove to Whiston hospital and time ticked on – we’d not expected to stay out so late, but we weren’t particularly worried at this point.

Poppy had some blood tests and at around midnight we were told her haemoglobin level was 3. Clueless we asked what it was supposed to be and we discovered that in children it should be around 10. I can remember a feeling of dread hitting me so hard and I instinctively knew ‘something bad’ was going on.

We returned to Whiston the following morning after a pretty restless night for a day of more blood and more tests. I think someone mentioned bone marrow being tested at that point, and that felt like another punch to the gut. But conversely the feeling in hospital certainly wasn’t one of panic and horror. One consultant seem rather convinced her symptoms were attributed to her nutritional intake and I know now that was the route that Kevin was focusing on.

That Monday night was also the first night I had to spend away from Poppy too. I was still feeding Oscar and it would have been impossible to leave him, so Kev stayed in hospital with her. That was hard and something I still feel guilty about to this day. I vividly remember lying awake and Googling “what are the symptoms of leukaemia” on my phone in bed as Oscar was snoring next to me. I started to get a sinking feeling which stayed with me for a long, long time and had a pretty restless sleep that night.

Tuesday was more tests and repeat bloods taken and a case of really bad timing when we had to transfer to Alder Hey in the middle of rush hour, with no clue of where we were heading and their hideous car parking arrangements. We had to be admitted via A&E there, and we were moved to ward C2, which despite everyone being great was a bit of a culture shock after the swankiness of Whiston. We were all cramped into a tiny room, and I remember starting to feel increasingly worried at this point. Poppy was very disgruntled as she’d thought we were taking her home. Everything felt claustrophobic and stressful. It hadn’t been the best way to arrive. We met Poppy’s consultant, Dr Caswell who seemed reassuring but told us they’d be repeating all the tests she’d already had the last two days. I can remember even then following him out into the corridor and asking him directly if the thought it was Leukaemia. Frustratingly I can’t properly remember his answer but it was along the lines that they had to rule everything out and it was a possibility. Looking back I often wonder if they were more sure than they let on – but I don’t think we would ever get an answer to that question. Perhaps they didn’t want to scare us? I was pretty scared by that point already, but I supposed I can follow that logic.

Wednesday was dreadful. Already resembling a pin cushion Poppy had blood taken so many times by that point I’d lost count. To get access she’d had cannula in the crook of her arms, back of her hands and her ankle. And each time it was happening she was getting more and more stressed out. Poppy had only ever been to a doctor once in her life until that week and she wasn’t taking all the poking and prodding well. I don’t blame her at all. With each new person who entered the room she became more stressed and more suspicious.

She had a blood transfusion that evening to make her strong for the scheduled theatre trip the next day. They gave her a sedative beforehand but it didn’t seem to do much. I’m not exaggerating at all when I say that for the first two hours of the transfusion she had to be physically restrained by myself and Kev on either side of her – holding her down to prevent her ripping the line out of her arm. It was such a hard task, I knew that the transfusion was making her strong but it was going against every instinct in my bones to put her through something which was making her so distressed. Each time we seemed to calm her down or temporarily distract her she would be disturbed by a nurse doing her observations which were every 15 minutes and the shouting and screaming would start again. Then, as if by magic she suddenly sat up – like a different child full of beans and energy and wanted to play and bounce up and down on her bed. It was as though the blood had suddenly perked her up and she was back to normal. Little did we know what the next day would bring…

Thursday. Diagnosis day. Anniversary. Cancerversary as I’ve heard it called. (bit weird). It’s hard to know where to start. A year on it’s still incredibly hard to put into words the thoughts and emotions that we had that day. I can remember the time line of events so vividly, but even after all this time my feelings are so hard to convey.

It started by having to go to theatre that morning, which meant Poppy having an anaesthetic, another first. Another step I never thought I’d be able to take. I took her into the theatre as only one parent was allowed, and I had till hold her in my arms till she went into a deep sleep and became floppy. It was hideous, I had to then walk out and leave her. I thought my heart was going to break. Again, it goes against all your natural instincts to leave your baby, lying there helpless – even though it’s in her best interests. Everything just feels so unnatural and wrong. I openly cried all the way back to the ward, snivelling down the corridors, (not for the last time either).

It’s strange the little details you recall, but I can remember a cleaner kindly touching my arm sympathetically not saying a word, and using her pass to open the door to let us back onto the ward.

Whilst in theatre the doctors were taking a bone marrow aspirate – which is like when you take the core out of an apple – in order to get a bone marrow sample. Although she wasn’t in theatre for long the waiting seemed to last forever. I can remember thinking not for the first time, how had we got to this point after what seemed like a fairly innocuous trip to a walk in centre. Things had escalated so quickly and it felt that with each day we were losing any sense of control.

I’ve still got texts on my phone from that day, letting people know she was out of theatre and that it had “gone well”. She seemed in such good spirits that for the first time that week I started to let myself think that everything was going to be OK.

I almost wince a little bit thinking back to that afternoon. We were so blissfully unaware of what was about to happen…

As Kevin had been staying in hospital with Pops he’d not seen much of Oscar so I suggested he go home for some rest, a shower and to see the champ. The idea being that I’d stay with Poppy till he took over that night time. Not long after he left around 5pm the student nurse, James who’d been looking after us came into the room. He said the results from theatre were back and the consultant wanted to speak to us in private. I knew then. Instinct, mothers intuition or whatever but I knew. Explaining that Kev wasn’t here, James insisted that Dr Caswell needed to speak to us together, and Kev needed to come back immediately. I rounded on poor James demanding that he tell me what was wrong, and that I needed to know if it was something “really bad”. Obviously he couldn’t say and I had to try and remain calm on the phone and instruct Kevin to quickly get back to hospital. No easy task when he was in the middle of traffic, but it felt as though he got back super fast. I’d paced and tided Poppy’s room, trying to keep calm in front of her, but my insides were churning and I felt sick.

As soon as Kevin returned it seemed as though Dr Caswell appeared and he came into the room followed by the ward sister Sally, who ominously shut the door behind them and suggested that we sat down.

Being told your two year old daughter has cancer was hands down the worst moment of our lives. The words hung in the air as we were calmly told that the results of her biopsy had shown leukemic cells but they would be repeating the procedure the next day to confirm as the bone marrow sample was so small (a clue of leukaemia within itself) and to establish what particular type she had.

We were told about treatment and survival rates but to me all I could hear was Leukaemia. Such a horrible looking, horrible sounding, vile little word.

I felt angry. How had this disease got into our Poppy? It felt so sinister that there was something inside her that we couldn’t see and had no control over. I’ve never felt so scared and so alone in my entire life. I turned to look out of the hospital window so as Poppy wouldn’t see me cry and I can remember seeing car lights and people in the streets outside. How dare they continue with their lives when ours was about to fall apart ? I was almost overcome with rage, so desperate for someone to take my hurt out on and for someone to blame.

Kevin on the other hand was his pragmatic self asking how we would fix this and make it better. I think that goes to show that there are no right or wrong ways to react to desperate situations, just that not everyone will react the same.

Whilst all of this was going on Poppy was playing happily on her bed, blissfully unaware of what was going on inside her. And I remember thinking almost how unfair that was. She was so innocent an had absolutely no concept of what was about to come. I remember asking how she could be so ill, when she looked so well. Just trying to comprehend it all, willing the doctors to have made a mistake and that they’d just let us go home.

The next few hours were pure adrenaline, fight or flight mentality. I had to keep busy as I was so scared of stopping because I didn’t know what I’d do. We needed to tell people what was happening and make a plan of how to deal with things. My best friends have since told me I was eerily calm telling them on the phone late that night but I didn’t want to start crying because I honestly thought if I did that I’d simply never be able to stop.

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People have told us that we have been brave and that they don’t know how we’ve coped, but the fact is that you do. We’re not brave, we were terrified but you have no choice but to continue. We had to do it for Poppy to be there for her through the next procedure, to get our heads around the jargon and the terminology and to help her in any way we could. We’d have done anything to trade places with her, and done anything possible to help make her better. That’s what being a parent is. It doesn’t make us special it makes us human. We were lucky that we had hope. From the off we had a morsel of hope to cling to. The doctors were confident and they spoke of success rates and making her better. Sometimes hope is all that you have, and we had to be hopeful.

There’s no denying it but when you hear the word cancer you think of death. It sounds like an evil thing to say, but you do. For a long time I did anyway. It was as though the two words were synonymous with each other. But, genuinely I don’t any more. In the last year I’ve seen children getting better and coping with far more than they ever should. I’ve watched Poppy overcome more than she should ever have had to, and I think she’s brilliant. I think all the nurses, doctors, consultants and scientists are brilliant. Obviously this is never the path we would have chosen for her, but to see how far she has come, in a year is incredible. We’re so proud of her and all that she’s had a cope with. I certainly couldn’t have ever imagined reaching this point a year ago. I thought today was going to be terrible, but it’s been fine. It’s another day. Another day Poppy is getting better and another step closer to the end of her treatment.  I will sign off with a picture of her taken today, looking happy, well and cheeky. I will look forward to posting another one next year, and in many, many years to come.

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Nursery

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The past few months have been really significant for Poppy. And have happily they don’t have anything to do with cancer. In September Poppy started nursery.

If you’d have told me at the beginning of this year that she’d be attending nursery for three hours five days a week I’d have said you were mad. The thought of entrusting her into the care of someone other than family, or indeed hospital staff would have terrified me. And there were often times when we never would have believed she would have been well enough. But yet again she defied my expectations…..

From the beginning of Poppy’s treatment, the doctors and nurses were keen to impress the importance of keeping life as normal as possible. And, as such they advised us to go ahead with starting nursery in September. As much as I’d always thought it would give Poppy a real boost socially – I couldn’t help but imagine nursery to be a breeding ground for germs and infections. To be fair, nurseries are and as her Consultant put it, it’s a “right of passage” for youngsters to pick up all manner of coughs and sneezes from their peers. But obviously in Poppy’s case it was potentially a lot more serious, and we knew her immune system wouldn’t always have the capacity to fight off every bug she may encounter.

But, what was the alternative ? We can’t and won’t keep her in a bubble for the duration of her treatment. It wouldn’t be fair to anyone, least of all Poppy. She needed the social interaction of nursery and even before she became ill we knew she would benefit from it immensely. Determined to keep life as normal as possible yet cautious we spoke to our Macmillan nurse who wholeheartedly agreed that it would be the right thing to do. When her place was confirmed over the summer it felt like a real boost and a positive sign that illness hadn’t scuppered every plan we had dared to make for our little girl.

As the months went by, we spoke to Poppy about nursery and sold it to her by telling her of all the play doh and painting she’d be able to do. I started to buy her uniform and as she was on the Maintenance stage of her treatment it felt like the right time. Our Macmillan nurse Helen had liaised with the school and they were fully aware of what was going on with the Popster. We found this incredibly reassuring and after chatting to the head of the school I felt that everyone was up to speed with Poppy’s needs and that, importantly they felt confident with their role in Poppy’s care too.

Don’t get me wrong, I’ve never asked for her to be singled out for special treatment or to be mollycoddled in anyway. The most important thing to me is that she’s the same as everyone else there. That she’s Poppy, not the little girl with Leukaemia.

So as her first day approached it was mixed emotions for us all. I’m sure most parents are anxious about their child being entrusted into some one else’s care, but I felt we had extra reason to worry. It also felt like a really significant day too. Finally something we had planned for wasn’t being ruined by illness. Typically things didn’t get off to a good start…

Recently in a diva-ish style Poppy flat out refuses to wear anything but dresses and tights these days. So, the jogging bottoms required for nursery were not met upon with delight. That’s putting it mildly. Before we’d left the house there were tears and tantrums, culminating with Poppy trying to put her uniform in the bin! This wasn’t how I’d imagined such an important day to begin. The first day was a taster session, whereby I was to stay in nursery with her and it was a chance to get the young ones used to their surroundings till we left them at the door the next day. Despite everyone being smiley and chatty, yet again Poppy was not impressed. She didn’t get off my lap the whole time and wouldn’t look at anyone who spoke to her. To make things worse she still had her dummy in refused to take it out. I tried to keep smiling and try to pique her interest but as she clung to me I could feel all the expectations I’d had for her first day start slipping away. To top it off she was mistaken for a boy twice (Poppy probably did have a point about those tracksuit bottoms after all) but it was the icing on the cake for me. And I’m ashamed to say I got home and cried. Big fat tears that had been kept at bay for a while were back. As I sobbed on the phone to my mum it wasn’t the first time I was struck with the unfairness of this all. Poppy’s always been shy with people she doesn’t know, but maybe if she hadn’t been through so much this year she’s have been a little more forthcoming? Perhaps it was asking too much of her too soon? In my mind the whole thing became a catastrophe and I imagined her being kept back a school year. Stupid bloody cancer ruining everything all over again.

I managed to pull myself together and my mum was summoned into action to purchase any school skirt or pinafore she could get her hands on. Those tracksuit bottoms had to go we were going to make this as smooth for Poppy as we could.

At the next visit I was the only mum allowed to go into the classroom with the children, so much for no special treatment. Again she clung onto me at first but very slowly she showed an interest in a story and I made a break for it. I felt wicked. My stomach was in knots and all the way home I imagined Poppy wailing wondering why I’d abandoned her. Turns out she did cry for ages but eventually she stopped and reluctantly joined in with an activity.

It wasn’t an easy process. Every time nursery was mentioned she’d tell you she didn’t like it and didn’t want to go. Each time I collected her she burst into tears and told me how much she’d missed me. She was the child at handover who was getting upset every day. The little girl with leukaemia who didn’t like nursery…

Then I was thrown a lifeline by a very kind mum who invited us over to play at their house. She’d wondered if getting to know her daughter outside of nursery would help ease Poppy in and go some way to making her more settled. I was so touched that she had noticed our plight and tried to help in some way. The playdate was a success and very slowly the tide began to turn.

It wasn’t easy but as soon as the children started attending nursery each day – the first few weeks had been split into two groups doing alternate days – something just seemed to click in her mind. She started going in without crying and I stopped feeling sick every time I left her. Her teacher had noticed it too, and when he mentioned seeing her playing with the other children or enjoying a song and story we could not have been happier.

As I see her confidence grow and her friendships form I’m astounded how far Poppy’s come from that miserable week in January. I couldn’t be more proud of her. We are now looking to apply for school places for next year, it seems finally things are starting to take shape. And she deserves it so much.

She’s missed the odd day due to hospital appointments or feeling unwell from chemo but nothing significant. The school are incredibly understanding and I genuinely believe she is in good hands. I now think of her teacher and the classroom assistants she adores as another set of people who are looking out for our Pops.

These days she generally has her uniform on ready and waits at the door telling me to hurry up. She skips there and chats on the way home about the things she’s done and who she’s played with. She refers to her classmates as her ‘friends’ and the progress she’s made from the positive influence of nursery, such as putting on her shoes and using the toilet have been invaluable. As ever Poppy just needed to do things in her own way in her own time. If I’ve learnt anything this year its never to underestimate that girl.

Child Cancer Awareness

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You may or may not know but the month of September is designated Child Cancer Awareness Month by the charity Children With Cancer UK. A large part of the project is a petition to the government asking for information cards detailing the signs and symptoms of childhood cancer to be given to all parents.

It may seem strange to think that cancer needs to be brought into the spotlight any more than it already is. Many, many people have been affected by cancer in one way or another. And, in some ways I’m not overly keen on giving it any more attention and power than it craves already.

But, the sad reality is that cancer does effect children to. And as we started to discover at the beginning of this year, it’s a lot more common than you may realise. The idea behind the campaign is to raise awareness of all types of childhood cancers. By highlighting the symptoms of all the different types of cancer, the hope is that more lives will be saved thanks to a quicker diagnosis. (A similar project was started to raise awareness of the differing types of meningitis and was very successful).

I don’t mean for this post to be hysterical or scaremongering, and I appreciate that parents have plenty on their plates already without speculating the worst about their children. But, if I had ever thought about childhood cancer before Poppy was diagnosed – then I thought of it as something that happened to other people. The sad fact is that 4,000 new cases of cancer in children and young adults are diagnosed in the UK each year.

I sincerely hope that anyone reading this blog will never have to experience what we’ve been through with Poppy but I saw that the charity had written a list of symptoms to look out for and I thought it may be helpful to share ? Here they are….

Continued, unexplained weight loss

Headaches, often with early morning vomiting

Increased swelling or persistent pain in bones, joints and legs

Lump or mass especially in the abdomen, neck, chest, pelvis or armpits

Development of excessive bruising, bleeding or rash

Constant infections

A whiteish colour behind the pupils

Nausea which persists or vomiting without nausea

Constant tiredness or noticeable paleness

Eye or vision changes which occur suddenly or persist

Recurrent or persistent fevers of unknown origin

Obviously this list is not comprehensive in all cases, and some children may experience incredibly few symptoms at all. Poppy barely had any. It’s also not my intention to scare people into constantly checking their child for a sign of darker forces at work. Yet the internet is awash with dodgy medical diagnosis and guff written about cancer but these are straight forward facts and hopefully it’s a help rather than a hindrance. I do believe it’s helpful to be informed. The fact remains that an early diagnosis will save lives.

One thing I’ve heard time and again when talking to other parents at hospital is the length of time it took for their children to get a firm diagnosis. I’ve heard so many stories of parents being fobbed off my GP’s who played down their child’s symptoms and were at their wits end as they knew something was wrong with their child. I’m not looking to lay blame with GP’s at all. It’s incredibly rare for them to see a case of childhood cancer during their career and as such they’re unfamiliar with making such an earth shattering call.

When I look back to Poppy’s diagnosis I think we were lucky. Which may sound a bit strange but the general feeling is that it was caught fairly early. No one is entirely sure of course, and we’ll never be able to pinpoint the time specifically when she got ill. (Something I really struggle with but I’m learning to accept). What I do think went in our favour was that we bypassed the doctors surgery altogether. Out of chance rather than any preconceived ideas about what was wrong with her, it just happened to be a Sunday and we took her to A&E via a walk in centre first. We’d only gone at the insistence of Kevin’s sister Maria, who’d offered to mind Oscar while we took Poppy to get checked out for ‘looking a bit pale and not seeming quite right.’

I always feel we’ll be in Maria’s debt. And, how grateful I am to the doctors at Whiston hospital for taking us seriously and being so thorough. Never in a million years did I guess the path our lives were about to take. But by midnight that night we’d learned that her haemoglobin levels were 4, when they should be 10 and I knew deep down that something was seriously wrong.

Maybe it’s an instinct or my predilection to being a worrier but I think deep down on that Sunday night I knew what was wrong with our baby girl. We didn’t get a formal diagnosis till the following Thursday. But four days after a fairly innocuous trip to the hospital my worst fears were confirmed.

I seem to find myself referring to things as either before or after Poppy was diagnosed. But it’s a significant point of reference and turning point in all our lives. The time frame of our world is before and after cancer. Sometimes look back to that fateful Sunday in January, and watch events back in my mind like a film where I know the ending but can’t stop watching as I desperately want the ending to change. I see us as powerless beings getting swept along in what was to be our fate which had already been mapped out. But, I now can rationalise and see that we had to start at the beginning to get to where we are today. In a contrary way that I am so grateful that Poppy’s journey started when it did. The only thing more scary than looking back at memories and pictures from that time and realising what was going on inside her while we were oblivious, is imagining if we’d have carried on not knowing and she didn’t start to get the treatment she needed so quickly.

I tend not to look backwards so much these days. At first every Thursday (diagnosis day) was hard, then The 23rd of the month (an anniversary of sorts) would make me shudder.

But slowly things started to change. Counting off weeks of treatment completed. Weeks turned into months and she was racing through each stage of treatment and the year seemed to be flying by. Now our calender has started to be filled with events other than hospital visits and more things to enjoy.

Poppy still is being treated for cancer but it doesn’t define who she is. Nor should it. She’s so much more than that. The things she’s accomplished and the progress she’s made impress me on a regular basis. So while I feel it’s important to document the start of how all this started and hopefully raise some understanding at the same time. It’s important to keep making those great leaps into her future too.

child cancer awareness

Maintenance

059The time had finally arrived that Poppy started the maintenance phase of her treatment. Maintenance is a pretty big deal, it’s the longest but most gentle phase of them all. If all goes to plan she’ll remain on this till the end of her treatment. So, for the next eighteen months or so we’re on the home stretch.

We were told at the hospital to think of Maintenance in terms of, that the cancer has been removed and this stage of treatment is to prevent it from coming back. When you think of it along those lines it’s easy to see why maintenance is a big deal for everyone on treatment and their families.

A wise oncology mum I’ve become friends with described this time as a chance to get some sense of your lives back. I can remember her telling us this and it felt so far off, yet I looked at her son who had a gorgeous head of hair and was running around full of beans and it gave me a glimmer of hope which I hadn’t experienced for a long while. I let myself imagine Poppy looking that well and dared to daydream about being able to make plans as a family once more.
If maintenance is a chance to get some semblance of your lives back, then I’m also seeing it as the beginning of having something to look forward to.
Being swept along in the tidal wave of diagnosis and the intensive stages of treatment, I spilt our time into manageable chunks in my mind. Getting through each procedure at first, then each day, each week and so on. If we got through a week or two without an admission we were doing well. But these days it feels as though we’ve had some kind of a reprieve, we’ve found ourselves doing nice things – I for one have found myself smiling again.
So here we are, a few weeks in and so far so good. Poppy’s still having treatment but it feels more than manageable. It’s Vincristine (chemotherapy) every four weeks, a thankfully small dose of steroids for 5 days a month, lumbar puncture every 3 months, and daily and weekly oral chemo at home. Infection is still a risk and her blood levels have taken a bit of a battering from the last intensive phase. Plus, it will take a little while to get the exact doses of her medication sorted in these early stages but, there a weeks at a time when we’re not due to be anywhere near a hospital. And that feels really good.

Part of our limited but new found freedom meant we were able to spend some time with my parents in my home town of Wolverhampton. Now, I appreciate that the Black Country may not be that exiting a prospect to many but a change of scene did wonders for us all. Obviously Poppy and Oscar enjoyed being spoilt rotten at nanny and grandpa’s, especially as they’d acquired a trampoline, swing and a slide in their garden. But I also realised that it was the first time I’d spent away from home with the children other than staying in hospital. It felt nice to doing normal things again.

The other important reason for our Midlands visit was to spend time with my big brother and sister in law before they emigrated for pastures new in Malaysia. I was worried about Poppy getting a temperature and us not being able to make it back to see them off, but luckily Poppy was on good form and the children got to spend some quality time with Uncle Matthew and Auntie Charmaine before they left. One of their many leaving do’s was a family party I was so happy we could attend as it was an opportunity to see my many aunties, uncles and cousins all of whom hadn’t been able to see Poppy since she got ill. Their support has meant a lot and I hoped seeing her in person, and how well she’s doing would allay their fears somewhat.

It was also quite a wrench saying goodbye to my brother and his lovely wife as their support since our first days in hospital has been incredible. So whilst it was sad to wave them off I tried to be philosophical and reminded myself that if this year has taught me anything it’s that life is too precious not to follow your dream. I wished them well and daydreamed about the potential nightmare of taking two small children on a long haul flight in a few years time…

I’ve mentioned before that this whole experience has opened my eyes to the many things I used to take for granted. And one of the biggest ways this has impacted on us all is the freedom to do as we please. To go out on a whim (well, with as much spontaneity as two small children allows) or to make plans for the future.

I never really stopped thinking about big milestones in Poppy’s life, but at the lowest points it was the simplest things which seemed like a huge challenge. Since her diagnosis there were skills which have had to be painstakingly relearned, and sometimes I wondered if she’d ever get there.
But, with each task remastered I’ve started to see aspects of my little warrior princess return which I honestly thought had gone for good.
It wasn’t just the starting to walk again or potty training for the umpteenth time, for me it was hearing her talk and sing again. Overhearing her often amusing imagination come into force when she’s playing and seeing her confidence around others grow has been a joy to behold. I’ve found myself with tears in my eyes on a few occasions as she performed some of her ‘interesting’ dance routines or declared the bed was a ‘bouncy castle’ and jumped around like a loon. The relief of her finally her wanting a bath- which she developed a strange aversion to as treatment started, has been huge. Simple things like going for a walk to find some puddles to jump in, are now daily routines I honestly believed had been lost forever.

Some days I can easily get choked up just thinking about how far she’s come. My tendency to over think things can sometimes trip me up, as I find myself wondering if we’re getting a little complacent, and maybe heading for a fall. But, again I’m trying to remain philosophical and appreciate the here and now. And, whilst it’s me who’s trying to retrain my thinking and get my head around our new life, Poppy continues to amaze me with her progress and determination. Each day I see a new version of our old Poppy come back, and with it I feel a love and admiration for her which grows by the day.

Delayed Intensification

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We’re coming to the end of a phase of treatment called Delayed Intensification. It was a phase I was dreading as we’d been told countless times how hard it could be.
An intensive phase, hence the name. It involved the usual suspects of steroids, oral chemo at home, and a painful injection. Plus the new additions of three new types of chemo – Doxorubicin, Cycloposphamide and Cytarabine. Any new forms of treatment bring an element of uncertainty as it’s always a gamble trying to predict how Poppy would react to the new medicine.

The doctors consider this phase as pretty hard going, due to the battering your immune system faces during this period. And, as we’re all to familiar with by now – low immunities mean neutropenia and hospital stays.
Despite fearing this phase I felt for once, quite prepared for the inevitable so it was no surprise really to find ourselves admitted to hospital with infections twice over this time. In a weird way it’s become part of the routine. Despite never being easy to stay in hospital and split our family in half it certainly doesn’t feel as gut wrenching as it used to in the early days.

I thought it would be worth writing a little about the experiences we’ve had staying as an inpatient with Poppy in hospital, as at times it’s easy to forget the surreality of the world we now inhabit.
I can clearly remember my first trip to Oncology and how real it made Poppy’s diagnosis feel. After all she didn’t look unwell at the beginning of her treatment, and seeing such visibly ill children on the ward came as a real shock. These days it’s the children with hair who stand out. It’s so easy to tell the children at end of treatment who are visiting on an infrequent basis compared to the newly diagnosed faces. They’re always accompanied by terrified looking parents often still in a state of shock. The children carry on oblivious while their parents try to take their greatest fears in.
I have nothing but sympathy for these people, yet despite being in the same situation myself only 6 months ago, its hard knowing what to say sometimes. Quite often there’s not much to be said at all, and it’s better to offer an ear to listen, hear another story you never quite become accustomed to hearing despite the alarming regularity with which these people are arriving.

Staying overnight in Oncology can sometimes feel like a weird and slightly depressing holiday camp. Even if your child is responding well and playing happily it can be the sights and sounds from other patients that bring you back down to earth with a jolt. For all the cheerfulness of the staff and the camaraderie between the parents, we have seen and heard children experiencing terrible pain and suffering which you never quite get used to.

We’ve overheard a mother’s pain as she lost her son, and heard of a lovely little girls passing just weeks after Poppy was in the adjoining bed on the ward. These children, and their families will stay with us forever.

It’s strange to be just a curtains width away from families going through so much, in what could be such a personal and private time. It can almost feel intrusive to be there, but there isn’t anywhere to escape to.

I’ve seen Poppy’s visitors burst into tears as they walked onto the Oncology ward, I forget sometimes what a shock it can be. I suppose to an extent we’ve become immune to so much. In the same way that I used to wonder how the nurses could work on such a ward and not feel terribly affected all of the time, this world of treatment just becomes the new normal.

I’ve heard myself as I’ve chatted to other parents in the parents kitchen, speaking with a whole new vocabulary which would have been alien to me at the beginning of the year. I’d never been any good at science then here I was talking Neuroblasphoma, neutropenia, regimens, stem cells, and lymphocytes. I felt like an expert in a new subject field I had no wish to study. Casually comparing blood counts with other parents, becomes as normal as talking about the weather. It’s as though we’re all veterans, in this together. Some kind of solidarity in despair and fear.

It’s not all miserable though, despite the constant underlying reason that we’re all there. At the end of our last stay Poppy actually got upset when the doctors told her we were free to go home! She wanted to stay and play with the toys she’d grown attached to whilst we were there. She likes to watch as we unfold the parents bed from its cupboard like holding on the wall next to her bed. Being Poppy, she is rather nosey and likes to see who is coming and going on the ward. And although she’s quite shy and doesn’t say much I know she likes the friendliness of the nurses, domestics who remember her name, and especially the fantastic play worker Pip who brings her play doh and paints.

Despite being in such close proximity to other families, strangers and their foibles and snoring I’m really not complaining. We’re lucky to live so close to Alder Hey. It’s such a fantastic hospital and to be able to have family visit us when Poppy’s staying in can be a massive boost (especially if they’re bringing her McDonald’s !) And it’s meant that Oscar can come in and see Poppy so they’re never separated for too long.
I was reading recently that until 1954 children in hospital were only allowed to see their parents for an hour on Saturday and Sundays. This seems unimaginable by the standards of today.
Alder Hey isn’t exactly a home from home, but Poppy is settled there in a strange way. It’s what she knows as it’s part of her little world, as much as the swings and grandparents visits. And, as Poppy is so accepting of her surroundings and situation, I have no choice but to choose to be too.

Doom and Gloom ?

ImageI haven’t been able to update the blog lately as I simply haven’t felt up to it. I know people were desperate for Poppy updates, and may have been concerned that the radio silence was a sign there was something wrong. But, if I’m being honest I haven’t had the energy or the capabilities of late. Despite Poppy’s continued resilience which amazes me daily, my mood seemed to have taken a turn for the worse.

It may sound perverse to say this, as I write a blog and share our lives but I find opening up to people really hard. I dislike the thought of others knowing my feelings and I despise the social media obsession with over sharing your every thought and movement. It’s my opinion that those who shout the loudest often have nothing worthwhile to say.

But, the reason I’m posting about my low mood is to try to convince others (and my self) that it’s nothing to be ashamed of. Countless times I’ve advised friends to speak to professionals or consider anti depressants in times of crisis. There is the age old adage that if you had a broken leg you’d fix it – so why not get help if your head doesn’t feel quite right? Just because you can’t see a problem doesn’t mean it’s not there. After all, at its most base level depression is simply an imbalance of the chemicals in your brain. Nothing to be ashamed of there. Yet I’ve struggled with this. I’ve really struggled to talk about what I’m scared of and how I feel. After all, it’s Poppy who’s ill and who is our priority. Why should I try and steal her thunder?

But struggled I have. There are dark thoughts that have filled my brain and the strangest of times, and there are so many sentences I’ve wanted to start but couldn’t finish. There is such emphasis on ‘staying positive’ (rightly so to an extent) that I felt there was no room left for me to talk through my fears. No space to not be upbeat for a minute and talk about how sad this was making me feel. People often use phrases like ‘be strong’ and ‘stay positive’ which although well intended made me keep my thoughts to myself. I didn’t want to be the one letting the side down. Our official party line was all about being positive. I felt like a traitor.

At times I almost felt like I had no right to have these feelings. On our last stay in hospital it was insinuated to me by another parent that because Poppy ‘only’ had ALL what they were going through was worse. Maybe it was, but to my mind there are no winners when your child has cancer. It’s not a competition. If it is, it’s a really shitty one that I want no part in.

I was speaking to a friend who had lost her child and we were considering how something as catastrophic as this changes you. How could it not? It changes everything. I find I care less about the small stuff these days. Some things simply no longer matter. But its a hard a very cynical way to be. Does that make it wrong ? I’m not sure, perhaps I don’t really care….

I’m still angry though. Angrier than ever. But frustratingly I have no one to focus my rage onto. I can’t be mad at the doctors, its not their fault. They’ve been great. We got an early diagnosis, we have lots to be thankful for. But some days, my anger scares me. I could kill with the venom I feel towards cancer and what it does to people. I’m desperate for something tangible that I could blame for all of this.

Perhaps I could be angry at god? But I don’t know if I even believe in god, and if I do, I want to keep him onside in case I have a favour to ask…. I don’t know. I don’t know much these days other than I can be consumed by this. It’s a relentless cycle of fear and worry with no respite. There is no escaping the fact that as a family we’re facing something so scary that for a time we were too scared to utter it’s name. Each day we see our Poppy and what this is doing to her. Even though she appears to be doing well, the worry never leaves and I feel resentful for the normality she’s missing out on. I know she’ll probably never remember any of this, but I sometimes wonder if I’ll ever be able to get over it.

If my brain and thoughts were mapped out like a pie chart these days, the biggest portion would be Poppy of course. And by Poppy I include worry, drugs, chemo, regimens and protocol, hospitals, doctors nurses, medicine and side effects. Then there’s the anger, the stress and did I mention, the worry.

Then the rest of the pie goes to Oscar, the worry, what effect this is having on his little world, the guilt that he’s been overlooked in all of this, and the fear of something happening to him also.

There’s not a lot of room for much else. It sounds heartless but I don’t have the capabilities for other peoples problems some days. I just don’t have the capabilities or the energy to process it. Less so the trivialities of everyday life. I often feel like saying to people I hear complaining about minor stuff that doesn’t really matter that if they wanted to see someone with real problems they should spend the day on a children’s cancer ward.

By the evenings I was like a zombie. Drained from the constant buzzing in my brain , I’d go to bed exhausted then find I couldn’t sleep and the fears started to creep in. The witching hour is always the worst I find when your mind becomes your worst enemy. In an especially cruel twist sometimes my dreams would be about losing Poppy and there really would be no escape. I’d wake up and it would all begin again.

I’m not really sure why all this came to a head recently. Perhaps because at the beginning of Poppy’s diagnosis we were so busy with it all. There is a certain fight or flight mechanism that kicks in and we didn’t really have time to stop and think. It was only when her treatment went to a more gentle phase that everything started to slow down and the new reality started to kick in. I often found the early days of Poppy’s treatment surreal. And on more than one occasion I half expected the doctors to turn around and say it had all been a mistake, there was nothing wrong with her after all.

But here we are. Obviously I’m happy that she’s doing well and the outlook is positive. But I can never relax about what is happening and there isn’t a day that goes by where I don’t get scared and wish things were different. I would do anything in my power to make this go away – the fact that I can’t fix her is where I really struggle. I’ve often felt so redundant in my role as Poppy’s mum. Everyone is doing so much for her and I can’t do anything to make her better. Like I say the guilt is always there. I really struggle with not knowing why or how she got this. Perhaps if I did I could focus my anger, and finally could lay fault with someone or something. I’ve worried it was something I did when I was pregnant or something that happened to her in my care. How could I have let this happen to her on my watch? I feel like I’ve let her down.

I know that having these thoughts aren’t helpful and I could have talked them through with friends or family, but how do you begin a conversation that you think no one really wants to hear? What could anyone say to make this better anyway? There’s no room to be morose when everyone is so focused on staying positive. It was my role to be upbeat and hopeful. Talk openly about treatment and how great everyone was at hospital, how well she was doing – not the thoughts that keep me awake at night.

Luckily, I eventually started talking and opening up. I needed to. I was like a pressure cooker of rage and worry about to explode in the most undignified way. No one needed to see that. I cried and swore and shouted, a big snotty mess of pain and relief behind closed doctors doors. I told a counsellor my biggest secrets and fears. My point that they couldn’t tell me what I wanted to hear most in the world – that everything was going to be OK and that Poppy was going to be OK still remained. No one can promise or guarantee me that. But, it did help. They passed me a tissue and I had the space to talk. They listened and afterwards I often feel exhausted and drained beyond words, but it was what worked for me. And there’s no shame in that.

I Want To Ride My Bicycle

Since Poppy’s diagnosis people have wanted to raise money for the various charities close to our hearts. It’s very kind and I think it’s a way of feeling as though you’re doing something to help and being proactive. We really appreciate people taking the time, and energy to do these things and we’re always touched by the kindness and lengths people are prepared to go.

A few weeks ago my dear friend Rachael ran in the Cancer Research race for life. Recently Poppy’s cousin Jake ran the Liverpool half marathon, his sister Evie raised money in school, her Uncle Ray is impressively taking on a series of bike rides throughout the year, including the 128 mile first stage of the Tour de France, and Auntie Karen traumatised the folk in Edge Hill job centre by setting up Wig Wednesday all for CLIC Sargent.

 

Next weekend on June 7th one of my oldest and bestest friends in the world, Mat is doing the Nightrider bike ride through London. It’s a 100km moonlit ride through various landmarks of the city. Whilst it sounds amazing, I’m seriously impressed that his old bones will be giving it a go. Not to mention his cycling buddies who have never met Poppy but are getting involved. Again, people’s kindness never fails to move me. I wish we could be there to cheer him on but we’ll be with him in spirit. He’s raising money for CLIC Sargent which is the charity for children with cancer and their families. If you could take a minute to look at his fundraising page and spare a few pennies it would be greatly appreciated by many.

 

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=MatWhipp&isTeam=true